Jimmie is still doing better as far as his pain and puking goes. Rachael is feeling like this improvement is due to using mostly breast milk and also cutting out the Erythromycin.
Also Jimmie has taken about an ounce by mouth with his feeds today! This is so encouraging to us! Go Jimmie go!
Rachael is doing well. She is keeping her chin up. She has worked very hard on her perspective lately and she is grateful for the tube. She is grateful that she can fill Jimmie's belly when he is hungry even if he refuses the bottle. She and Justin are requiring a lot of help though. The process of feeding Jimmie is complicated and takes a good 90 minutes.
You have to mix Jimmie's concoction of breast milk and fortifier. Rachael is doing this in bulk for the day. Then you have to warm his milk. Then you put the milk in the bag that's connected to the pump. You prime the tubing- meaning you work the milk down it to the end and then you blow air in Jimmie's portion of the tubing and listen with a stethoscope to Jimmie's stomach to make sure the tube is in the right place. Then you hook Jimmie up to the pump and you program how many mls you want to go in over whatever time frame is appropriate. Right now he is taking his feeds over an hour. After the hour is up you unhook Jimmie from the pump and flush his portion of the tube with water. Then you flush the rest of the tubing and rinse the bag. Then you either hold Jimmie upright or watch him closely while he's sleeping in his nap nanny for another hour to make sure he has the help he needs if he starts puking. Since Rachael offers him a bottle while his tube feed starts she also gets that ready. Depending how much he ends up taking by mouth she looks at how much he has had on the pump and re-programs the rest of his feed after he's done with his bottle. That way he doesn't get too much. He gets his dose of Prevacid twice a day and two feeds that are just formula twice a day for calorie purposes. Rachael gives him his formula feeds and his dose of Prevacid at 9am and 9pm. Jimmie eats at 3, 6, 9, 12 around the clock. So Rachael basically has 90 minutes to sleep in between feedings. However she also has to pump breast milk 3 or 4 times in a 24 hour period as well.
Is you head spinning? Mine is . . . Seriously, it's a good thing Rachael is Super Mom! She just shrugs her shoulders and says, "Yeah it's intense, but you gotta do what you gotta do."
Justin knows how to work the pump and feed Jimmie. Rod, Kathy and Mom will probably learn as well.
Rod spent the night at the hospital with Rachael Saturday night when Justin had to work. He has a great touch with Jimmie and he pretty much sacrificed his night so Rach could sleep. The nurses were still running the pump at that point, but Rod was up most of the night taking care of Jimmie. What an AWESOME grandpa.
We are just trying to take this a day at a time, but also having to discuss the future. As in Rachael's ability to do anything else other than take care of Jimmie. We run a dance program together... We are so thankful for our big awesome family and are so blessed with some amazing friends who are stepping up to support Rachael and Justin during this time. Mom is working on putting together a schedule of people who can help Rachael during the day with Jimmie by doing TKM, holding him, changing diapers, doing laundry or anything that's needed. Letting Rachael take a nap etc... Hopefully this will help Rachael and Justin hang onto whatever sanity they have left. And also help Rod and Kathy, they both work and since Rachael, Justin and Jimmie are living with them they are doing A LOT! But that comes with rewards. They get to live with their totally awesome, cute, miraculous, amazing grandson. (-:
God is good. This too shall pass. We'll get through this.
Please keep praying!
P.S. My mom just informed me I've started spelling Erythromycin wrong. I think I was writing the name of a different drug. ARG! Ellie please feel free to correct me on these things! (-: